Healthcare Journeys Research Articles

Disrupted Candidacy: A Longitudinal Examination of the Constrained Healthcare-Access Journeys of National Health Service Workers in Scotland Seeking Supports for Long COVID Illness.

Evidence examines how persons experiencing Long COVID (LC) struggle to secure healthcare for symptoms. However, few studies examine healthcare workers experiencing LC, nor the complex and multiple difficulties faced when seeking and receiving healthcare. This study is based on two phases of longitudinally conducted qualitative interviews, 6 months apart, with National Health Service (NHS) workers experiencing LC, from different occupational roles at NHS locales in Scotland (first interviews, n = 50; second interviews, n = 44). Multiple factors restricted healthcare access, including worries about pressuring the NHS and concerns over LC being legitimised. When healthcare was sought, workers struggled to secure support, referrals and treatment. The following reasons were included: (1) context: the restrictive pandemic healthcare context; (2) illness climate: low GP knowledge surrounding LC and how this could be treated, trends for ascribing symptoms to other causes and reluctance to diagnose LC; (3) sense-making of LC: healthcare availability linked to occupational role identity. To visualise and examine healthcare barriers, candidacy theory is applied, drawing inferences between healthcare context, illness climate, sense-making and identities. NHS workers' complex journeys represent Disrupted Candidacy, intersecting challenges across candidacy domains, restricting the seeking and receiving of LC healthcare. Findings provide insights into why NHS workers resisted and withdrew from healthcare-seeking, and the barriers they faced when attempting to secure LC support. This study presents a pathway for future LC illness research to use a modified candidacy theory framework. This research focuses on amplifying and learning from lived experiences, and the voices of NHS workers in Scotland experiencing LC. Interviews represent primary data for this study; thus, participants and their healthcare journeys are centred in this research and all aspects of production, reporting and output. Explicit discussions of stakeholder group involvement are highlighted in the methods section.

Transitions Between Home and Unscheduled Care in the Last Year of Life

Almost half of Scottish people who die currently die in hospital, which may represent a complex need or lack of alternative options. Nearly 95% of people use unscheduled care in their last year of life, which includes the Emergency Department (ED) – the outcome of ED attendance is often hospital admission. This increased use of unscheduled care services is associated with high costs and poor patient outcomes. This study analyses sequences of patient visits and describes patterns of ED attendance and inpatient admissions in the patients' final year of life to help understand their healthcare journeys. This work examines the use of ED attendance and hospital admissions in NHS Tayside and NHS Fife between 2000 and 2021 for people in the last year of life. The retrospective cohort consists of all patients 18+ who died and visited the ED or were admitted to the hospital at least once. From a study population of 981,879, 164,506 (17%) people died, with 148,734 (90%) people having an ED visit or hospital admission. Data was divided for the 52 weeks before death, with three possible states for each week: home, ED visit, and admission. A preliminary analysis shows high and significant variability in ED attendance and hospital admissions with distinct usage patterns. A better understanding of the patients' characteristics within each pattern may allow for potential interventions that improve patient care by reducing avoidable ED attendances or hospital admissions in the last year of life.

A qualitative exploration of the patient journey in axial spondyloarthritis towards a people-centered understanding

This exploratory qualitative study aims to gain a people-centered understanding of the patient journey in axial spondyloarthritis (axSpA). Semi-structured interviews were conducted with 15 individuals diagnosed with axSpA, aged 18 years and older, who were purposively recruited from a rheumatologic practice in southern Germany. The interviews were carried out as web-based video calls between September and October 2021, audio-recorded, transcribed verbatim, and analyzed according to Kuckartz’s qualitative content analysis. Patient journey narratives encompassed both healthcare journeys and personal journeys. Healthcare journeys were characterized as fragmented and difficult to navigate, with diagnosis often marking a turning point toward more coordinated care. Post-diagnosis, new challenges emerged (e.g., time management for treatment). Personal journeys comprised perceptions of axSpA in social contexts (e.g., stigmatization) and the continuous interplay of comorbidities and biographical events with healthcare related to axSpA. This study proposes a people-centered perspective on the patient journey in axSpA, emphasizing the interplay of biographies, comorbidities, and social context with healthcare events. Recognizing these personal factors in clinical practice is encouraged to address complex health needs and tailor treatment to each individual. Further efforts should promote collaboration between medical disciplines and integrate healthcare and social support at all stages of the axSpA patient journey.

An AI-enabled Approach to Experience Blueprinting: Co-creating healthcare experience journeys with AI

As we navigate complex service landscapes, how might we harness the power of generative AI to enhance the experience blueprinting process? Our explorations delve into the potential of AI in co-creating detailed, context-aware journeys – offering a fresh perspective on integrating AI with service design.

Mothers’ Internet Journeys Through Social, Health Care, and Virtual Systems When Congenital Anomalies Are Diagnosed In Utero

ObjectiveTo examine mothers’ internet usage, in conjunction with social, health care, and virtual peer support navigations, when congenital anomalies were diagnosed in utero. DesignQualitative descriptive, consisting of semistructured interviews. SettingInterview data were collected over Zoom; mothers participated from locations of their choosing. ParticipantsMothers of neonates discharged postoperatively from NICUs for uterine-diagnosed congenital anomalies. The sample was purposefully recruited from private Facebook groups for parents of children with congenital anomalies. Intervention/MeasurementsAnalysis was done with deductive coding using concepts from the third iteration of the systems engineering initiative for patient safety theory. The a priori codes were health care, social, journey–benefit, journey–risk, task, and technology. ResultsTwenty-two mothers signed up for an interview; 12 completed an interview, and 10 did not. The majority (n = 8, 66%) were White, had a bachelor’s or graduate degree (n = 7, 58%) and were between 24 and 33 years of age (n = 8, 66%). Nine themes emerged: (a) Providers cautioned searching for diagnosis information but encouraged private Facebook groups for peer support, (b) Mothers’ inquiries for their own care are lacking, (c) Search for information while recognizing parent-partner’s coping differences, (d) Pace information from friends and family with patience and appreciation, (e) Manage inquiries from friends and family with group sharing, (f) Private Facebook groups provide a means of receiving and giving peer support, (g) Exposure to difficult stories on Facebook is a risk of stress, (h) Select a NICU, learn about their children’s diagnoses, participate in virtual peer support, and (i) Device features frame search strategies. ConclusionMothers reflected on the internet as a burden and a source of support in their health care journeys. The ubiquity of internet access calls for mothers to include in their health care journeys the complexities of managing time spent on the internet.

A mile in their shoes: understanding health-care journeys of refugees and asylum seekers in the UK

PurposeRefugees and asylum seekers worldwide face numerous barriers in accessing health systems. The evidence base regarding who and what helps refugees and asylum seekers facilitate access to and the navigation of the health system in the UK is small. This study aims to address this gap by analysing 14 semi-structured, in-depth interviews with refugees and asylum seekers of different countries of origin in the UK to identify where, when and how they came into contact with the health-care system and what the outcome of these interactions was.Design/methodology/approachSemi-structured, in-depth interviews were chosen as the key method for this study. In total, 14 individual interviews were conducted. A trauma-informed research approach was applied to reduce the risk of re-traumatising participants.FindingsThe paper identifies key obstacles as well as “facilitators” of refugees’ and asylum seekers’ health-care experience in the UK and suggests that host families, friends and third-party organisations all play an important role in ensuring refugees and asylum seekers receive the healthcare they need.Originality/valueTo the best of the authors’ knowledge, this is the first qualitative study in the UK that looks at comprehensive health journeys of refugees from their first encounter with health services through to secondary care, highlighting the important role along the way of facilitators such as host families, friends and third-party organisations.

Multimodal learning for temporal relation extraction in clinical texts.

This study focuses on refining temporal relation extraction within medical documents by introducing an innovative bimodal architecture. The overarching goal is to enhance our understanding of narrative processes in the medical domain, particularly through the analysis of extensive reports and notes concerning patient experiences. Our approach involves the development of a bimodal architecture that seamlessly integrates information from both text documents and knowledge graphs. This integration serves to infuse common knowledge about events into the temporal relation extraction process. Rigorous testing was conducted on diverse clinical datasets, emulating real-world scenarios where the extraction of temporal relationships is paramount. The performance of our proposed bimodal architecture was thoroughly evaluated across multiple clinical datasets. Comparative analyses demonstrated its superiority over existing methods reliant solely on textual information for temporal relation extraction. Notably, the model showcased its effectiveness even in scenarios where not provided with additional information. The amalgamation of textual data and knowledge graph information in our bimodal architecture signifies a notable advancement in the field of temporal relation extraction. This approach addresses the critical need for a more profound understanding of narrative processes in medical contexts. In conclusion, our study introduces a pioneering bimodal architecture that harnesses the synergy of text and knowledge graph data, exhibiting superior performance in temporal relation extraction from medical documents. This advancement holds significant promise for improving the comprehension of patients' healthcare journeys and enhancing the overall effectiveness of extracting temporal relationships in complex medical narratives.

Opioid Risk Mitigation Practices of Interprofessional Oncology Personnel: Results From a Cross-Sectional Survey.

This study explored the risk mitigation practices of multidisciplinary oncology health-care personnel for the nonmedical use of opioids in people with cancer. An anonymous, cross-sectional descriptive survey was administered via email to eligible providers over 4 weeks at The Ohio State University's Arthur G. James Cancer Hospital. The survey asked about experiences and knowledge related to opioid use disorders. The final sample of 773 participants included 42 physicians, 213 advanced practice providers (APPs consisted of advanced practice nurses, physician assistants, and pharmacists), and 518 registered nurses. Approximately 40% of participants responded feeling "not confident" in addressing medication diversion. The most frequent risk reduction measure was "Checking the prescription drug monitoring program" when prescribing controlled medications, reported by physicians (n = 29, 78.4%) and APPs (n = 164, 88.6%). People with cancer are not exempt from the opioid epidemic and may be at risk for nonmedical opioid use (NMOU) and substance use disorders. Implementing risk reduction strategies with every patient, with a harm reduction versus abstinence focus, minimizes harmful consequences and improves. This study highlights risk mitigation approaches for NMOU, representing an opportunity to improve awareness among oncology health-care providers. Multidisciplinary oncology teams are ideally positioned to navigate patients through complex oncology and health-care journeys.

Mapping young people's journeys through mental health services: A prospective longitudinal qualitative study protocol.

Mental ill health is a major health risk for young people. There is unmet need for mental health assessment and treatment across Australia despite significant investment in government-funded plans to cover mental health and youth-oriented services. Understandings of mental health care for young people are impeded by a lack of longitudinal research. Without this research, it is difficult to understand how services do or do not support the recovery of young people over time. This project will analyse the healthcare journeys of young people aged 16-25 years experiencing their first episode of mental ill health for which they have sought GP support, over 12 months in the Australian Capital Territory. The study team will recruit up to 25 diverse young people and their general practitioners (GPs), and conduct four qualitative semi-structured interviews over 12 months with each participant. GP interviews will explore their role in the mental health care and care coordination for the young person. Interviews with young people will explore experiences and perceptions of navigating the health system, and the supports and resources they engaged with during the 12-month period. In between interviews, young people will be asked to keep a record of their mental health care experiences, through their choice of media. Participant-produced materials will also form the basis for interviews, providing stimuli to discuss the lived experience of care. Through analysing the narratives of both young people and their GPs, the study will establish how young people understand value in mental health care delivery. The study will use longitudinal qualitative mapping of healthcare journeys to identify key barriers and enablers to establishing effective, person-centred health care for young people with mental ill health.

Beliefs and Narratives Associated with the Treatment of Chronic Pelvic Pain in Women

Female patients with chronic pelvic pain (CPP) face complicated healthcare journeys, but narrative perspectives on CPP treatment are lacking. We collected data in English and Spanish from discussion groups and individual interviews with stakeholders around female CPP. A tertiary care center for gynecologic care. Patients with CPP who self-identified as women/female, community healthcare workers, and providers who care for women with CPP. We conducted discussion groups with all 3 types of stakeholders and individual interviews with female patients who have CPP. Patient participants completed condition specific validated questionnaires. De-identified transcripts were coded with NVivo software. We contrasted patient characteristics and codes between patients with CPP who did and did not report opioid use in the last 90 days. The mean pain score of patient participants was 6/10 ± 2/10, and 14 of 47 (28%) reported recent opioid use, without significant differences between patients with and without recent opioid use. Thematic saturation was achieved. Five main themes emerged: the debilitating nature of CPP, emotional impacts of CPP, challenges in CPP healthcare interactions, treatment for CPP, and the value of not feeling alone. Common threads voiced by stakeholders included difficulty discussing chronic pain with others, a sense of inertia in treatment, interest in alternative and less invasive treatments before more involved treatments, and the need for individualized, stepwise, integrated treatment plans. Participants agreed that opioids should be used when other treatments fail, but women recently using opioids voiced fewer concerns about addiction and positive experiences with opioid efficacy. These findings among female patients with CPP and also among community healthcare workers and providers advocate for a move toward patient-centered care, particularly the acknowledgment that every woman experiences pain in a singular way. Furthermore, stakeholders voice a deep need for development of individualized treatment plans.

Design Implications to Support Integrative Medicine in Pregnancy Care

The use of integrative medicine (IM) practices during pregnancy are on the rise in the United States and a growing number of individuals seek pregnancy support outside of the conventional medical system every year. There is a variety of integrative medicine providers (IMPs) who work outside the clinical system to fill the gaps in pregnancy support by providing a set of services such as midwifery, doula care, childbirth education, and lactation support. Evidence suggests integrative medicine providers positively impact pregnancy experiences, yet IMPs are often marginalized and excluded from the conventional pregnancy healthcare system. We present results from an ongoing investigation that seeks to understand the roles IMPs play in pregnancy healthcare journeys, and the pregnancy ecology. We interviewed 12 integrative medicine providers to understand their needs and challenges concerning technology, business models, and communication practices. Our findings reflect on a broad range of topics including the intersection of personal and professional journeys, legitimacy within the healthcare system, and the provision of personalized care. We discuss the potential for technology to support IMPs and present implications for the design of future pregnancy support technologies. Improving collaborative care and communication technologies for the IM community has the potential to improve professional experiences and the quality of care provided by IMPs. WARNING: This paper includes detailed personal narratives of individuals' pregnancy healthcare journey including information about, pregnancy, labor, delivery, birth stories, and pregnancy loss.

Cough Characteristics and Healthcare Journeys of Chronic Cough Patients in Community-Based Populations in South Korea and Taiwan

PurposeThis study aimed to understand the cough characteristics and health journeys among community-based chronic cough (CC) patients, and their characteristics associated with healthcare visits.MethodsA population-based cross-sectional study was conducted in 2020, using the South Korea and Taiwan National Health and Wellness Survey (NHWS) and CC surveys. Patients with current CC were defined by daily coughing for > 8 weeks in the past 12 months and currently coughing at the time of survey. The survey items pertained to CC patients’ treatment journey and cough characteristics.ResultsPatients with current CC in South Korea and Taiwan, respectively, had cough duration for 3.45 ± 5.13 years and 5.75 ± 7.28 years and cough severity visual analogue scale (VAS) scores of 4.50 ± 2.15 and 4.46 ± 1.92 out of 0–10 scale, with 70.3% and 57.9% having spoken with a physician about cough. Compared to CC patients who had not visited healthcare professionals for cough, those who visited reported more severe cough (VAS: 3.89 ± 1.71 vs. 4.6 ± 2.02; p = 0.009), worse cough-specific quality of life (Leicester Cough Questionnaire: 16.20 ± 3.23 vs.13.45 ± 2.68, p < 0.001), greater symptom severity (Hull Airway Reflux Questionnaire: 16.73 ± 15.16 vs. 24.57 ± 13.38; p < 0.001), and more urinary incontinence (13.6 vs. 26.5%, p = 0.027). More than 50% of patients perceived cough medication(s) as not or a little useful and 25% felt their physicians did not well understand how CC impacts their life.ConclusionCough is frequently severe and persistent among community-based CC patients. They experience several issues in their health journey, including treatment ineffectiveness and physician’s understanding. Further efforts are warranted to reduce CC burden in the community.

Dynamic Digital Twin: Diagnosis, Treatment, Prediction, and Prevention of Disease During the Life Course.

A digital twin (DT), originally defined as a virtual representation of a physical asset, system, or process, is a new concept in health care. A DT in health care is not a single technology but a domain-adapted multimodal modeling approach incorporating the acquisition, management, analysis, prediction, and interpretation of data, aiming to improve medical decision-making. However, there are many challenges and barriers that must be overcome before a DT can be used in health care. In this viewpoint paper, we build on the current literature, address these challenges, and describe a dynamic DT in health care for optimizing individual patient health care journeys, specifically for women at risk for cardiovascular complications in the preconception and pregnancy periods and across the life course. We describe how we can commit multiple domains to developing this DT. With our cross-domain definition of the DT, we aim to define future goals, trade-offs, and methods that will guide the development of the dynamic DT and implementation strategies in health care.

Beliefs and narratives associated with the treatment of chronic pelvic pain in women

Women with chronic pelvic pain (CPP) face complicated healthcare journeys. We aimed to gather stakeholder perspectives from patients, community health workers (CHWs), and medical providers on treatment for CPP.

Emotional labour in the collaborative data practices of repurposing healthcare data and building data technologies

This article focuses on emotions, conceptualised as emotional labour, evoked during data practices used to repurpose and enable healthcare data journeys for Finnish public healthcare. Combined approaches from critical data studies and the sociology of emotions were used to contribute to a better understanding of the mundane but often invisible work of the emotions of experts involved in data practices, such as facilitating data journeys and building data technologies. The article is based on a two-and-a-half-year ethnographic study conducted in a Finnish regional public healthcare and social service organisation. The study results were derived from the analysis of 39 interviews and fieldnotes produced by observing 170 h of various meetings, events and work activities performed by experts. The results were organised into three forms of observed experts’ emotional labour related to three phases of healthcare data journeys: (a) caring for data production and preparing data for travel, (b) managing excitement and frustration in data processing for continually building the data management system, and (c) reassuring users in making sense of obtained data analytics. The results contribute to a greater understanding of the emotions and emotional labour generated by healthcare data journeys and in relation to the volatile nature of healthcare data and the collaborative character of data practices. This work advocates for a better recognition of the emotional aspects of data practices and their implications on data-based knowledge and datafication processes in healthcare.

Maximizing Opportunities for User-Centered Design in Acute-Care: Introducing the Focal Wall.

Digital health is a promising development in the pursuit of patient centered care. Technological developments, like patient portals, are providing new opportunities for patients to engage in their own healthcare journeys, increasing access to health data and practitioners in many cases. The primary objective of this research is the establishment of an in-patient portal for a new children's hospital through a collaborative design process. This paper details experiences from the first phase of this multi-year project and in particular methodological solutions that have been developed in order to meet the challenges of engaging acute care patients, families, and practitioners in user-centered design within such a demanding context.

Advancing leadership in medical radiation sciences: Incorporating systematic leadership education in pre-registration curricula

Advancing leadership in medical radiation sciences: Incorporating systematic leadership education in pre-registration curricula

The Lumos Pilot Project: Feasibility of Linking General Practice Data to Other Health-Related Data

IntroductionDelivering integrated care is an aspiration of health systems around the world. General Practices (GPs) operate between other types of health care and are therefore key to effective integrated care. However, information to understand the patient journey across the health system, such as between primary and acute care, is currently impeded in Australia by lack of interoperable clinical software, privacy concerns, and cross-jurisdictional barriers. This presents a challenge to the formation of an evidence base for the design and implementation of integrated health services.&#x0D; Objectives and ApproachThe Lumos Pilot Project aims to address these challenges. Following ethics approval in February 2016, the pilot was rolled out over five stages to develop a proof of concept for extracting and linking GP data to other health-related data. The objectives were to:I. Build cross-jurisdictional collaborations between primary care and the state health system in New South Wales (NSW), Australia.II. Develop methodologies to address confidentiality requirements.III. Develop technological solutions that will allow for a large scale program.&#x0D; ResultsData were extracted from 102 GPs, covering nearly 1 million patients, and linked to emergency department, hospital and mortality records. GPs were recruited to participate through collaborations with all NSW Primary Health regions. Privacy preserving record linkage was successfully implemented in the fifth stage of the project. This process encoded patient identifiers prior to extraction from the GP and negated the need for identified information during data linkage. Software was developed and tested across all stages of the project so that once enrolled, GP data extraction and transfer were fully automated.&#x0D; Conclusion / ImplicationsThe resultant dataset has provided a new picture of patients’ healthcare journeys while preserving patient privacy. The technological solutions allow for a large scale up of GP recruitment in future.

Drug-resistant tuberculosis patient care journeys in South Africa: a pilot study using routine laboratory data.

SETTING: Thirteen districts in Eastern Cape (EC), KwaZulu-Natal (KZN) and Western Cape (WC) Provinces, South Africa.OBJECTIVE: To pilot a methodology for describing and visualising healthcare journeys among drug-resistant tuberculosis (DR-TB) patients using routine laboratory records.DESIGN: Laboratory records were obtained for 195 patients with laboratory-detected rifampicin-resistant TB (RR-TB) during July-September 2016. Health facility visits identified from these data were plotted to visualise patient healthcare journeys. Data were verified by facility visits.RESULTS: In the 9 months after the index RR-TB sample was collected, patients visited a mean of 2.3 health facilities (95% CI 2.1-2.6), with 9% visiting ≥4 facilities. The median distance travelled by patients from rural areas (116 km, interquartile range [IQR] 50-290) was greater than for urban patients (51 km, IQR 9-140). A median of 21% of patient's time was spent under the care of primary healthcare facilities: this was respectively 6%, 37% and 39% in KZN, EC and WC. Journey patterns were generally similar within districts. Some reflected a semi-centralised model of care where patients were referred to regional hospitals; other journeys showed greater involvement of primary care.CONCLUSION: Routine laboratory data can be used to explore DR-TB patient healthcare journeys and show how the use of healthcare services for DR-TB varies in different settings.

Health care equity and access for marginalised young people: a longitudinal qualitative study exploring health system navigation in Australia

BackgroundYoung people have unique social, emotional and developmental needs that require a welcoming and responsive health system, and policies that support their access to health care. Those who are socially or culturally marginalised may face additional challenges in navigating health care, contributing to health inequity. The aim of this study was to understand health system navigation, including the role of technology, for young people belonging to one or more marginalised groups, in order to inform youth health policy in New South Wales, Australia.MethodsThis qualitative longitudinal study involved 2–4 interviews each over 6 to 12 months with marginalised young people aged 12–24 years living in NSW. The analysis used Nvivo software and grounded theory.ResultsWe interviewed 41 young people at baseline who were living in rural or remote areas, sexuality and/or gender diverse, refugee, homeless, and/or Aboriginal. A retention rate of over 85% was achieved. Nineteen belonged to more than one marginalised group allowing an exploration of intersectionality. General practitioners (family physicians) were the most commonly accessed service throughout the study period.Participants were ambivalent about their healthcare journeys. Qualitative analysis identified five themes:Technology brings opportunities to understand, connect and engage with servicesHealthcare journeys are shaped by decisions weighing up convenience, engagement, effectiveness and affordability.Marginalised young people perceive and experience multiple forms of discrimination leading to forgone care.Multiple marginalisation makes health system navigation more challengingThe impact of health system complexity and fragmentation may be mitigated by system knowledge and navigation supportConclusionsThe compounding effects of multiple discrimination and access barriers were experienced more strongly for young people belonging to mutiple marginalised groups. We identify several areas for improving clinical practice and policy. Integrating technology and social media into processes that facilitate access and navigation, providing respectful and welcoming services that recognise diversity, improving health literacy and involving professionals in advocacy and navigation support may help to address these issues.